ALS/Lou Gherigs Disease (sad and angry)

The BBQ Pit
1

My beautiful talented, wonderful aunt lost her battle with Lou Gherig’s disease last night, right about when the eye of the hurricane was passing over/around me in the DC area. She was a week shy of her 58th birthday. She weighed 98 pounds, and at the end, she couldn’t talk, move, swallow…anything. And yet, her eyes showed that she was aware, awake, and fully connected, right up to the end.

She spent 3 years going to clinics, having horrible IV treatments on the off chance that it was Lyme Disease instead of ALS (they are both diseases that you can only treat symptomatically - no definitive test), eating horrible soupy messes that her stomach tube could handle - this, a woman who lived and breathed in her kitchen, cooking up gourmet delicacies in the woods of Maine.

She was a lawyer, an advocate, and the Favorite Aunt to all of my cousins. She married late in life and never had kids, but we were always welcome in her home - to eat cookies, get encouragement when things were difficult, and laugh at her silly husband (who once converted their basement into a tiki bar, complete with a truckload of sand, when we couldnt take winter for One More Second).

I last saw my aunt as “herself” 3 years ago, when she travelled here to DC to tell me in person what she was about to be going through. She made me a promise that she would tell me when it was time to worry. I last saw her in the flesh in August, past speaking, past communicating verbally…but on her keyboard (which she called Mabel) she typed out “Anna, you can worry now”.

Why??!! This disease is so terrible. It eats away at the body, never touching the mind. It ravages your ability to make choices, to communicate, to GOLF, godammit. And yet, you’re still “you”, all the way to the bitter, humiliating, painful end.

My heart goes out to all who have suffered with a loved one through this nightmare - and my prayers go out to all those who suffer with it that they find the peace they want, and are allowed the dignity they deserve.

I put this in the Pit because I thought I would cuss a lot, but in the end, it seems less powerful to reduce my anger and pain to a bunch of 4-letter epithets.

Rest in peace, Susan. I love you.

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I’m sorry, Anna.

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Thanks TVAA. I’ve had some time to get used to it…but you never really can. I appreciate the sympathy.

4

How awful Anna. My deepest sympathies to you and your family. :frowning:

I don’t think there are any good ways to die at that age, but ALS is certainly one of the bad ones.

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I’m sorry for your loss, Anna.

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Thanks alice_in_wonderland, and Gingy. My heart hurts, and I know there are many others whose do to. However, there is balm in gilead - she isn’t in pain any more. I believe she is somewhere with a fully stocked gourmet kitchen, 18 holes of competition golf, and Frank Sinatra and Johnny Cash to sing her to sleep.

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{{{AnnaLucretia}}}
[sub]Hugs to you… been there… My mom died of ALS.[/sub]

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{{{Sunspace}}} - I really feel for your loss as well. I hope you and your family have found peace - and my faith tells me that your mother has (for what that’s worth).

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Anna, I am sorry for your loss. I lost my grandfather to ALS 15 years ago, and yes, it’s a horrid disease…

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Oh, Anna, I’m so sorry. My mom died of ALS almost six months ago exactly, and I think about her every hour. It’s a horrible disease, and you have my deepest sympathies. It’s so hard watching someone go through that. Your aunt sounds like a wonderful woman. If you ever want to talk and/or need someone to listen, my email’s in my profile.

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I love this place. I swear, I feel like I’ve been hugged all over. Thanks, all. You all make things easier.

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I’m sorry. :frowning: It sounds like she was a great, interesting person. I have no personal experience with ALS, but it sounds like a very frustrating and baffling disease. My sympathies to all of you who have been touched by it.
After reading your story I decided to look up some info on the disease. It is sad to see that there has not been much progress in treating ALS in all these years since Lou Gehrig. Your aunt’s story makes me want to do something to support ALS research. Nobody should have to go through that kind of nightmare. :frowning:

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Oh, Anna. I can’t imagine how it must have felt, seeing this unfold over such a long period of time. But you may have read that I lost my dad recently to a brain tumour, that completely took away everything he could do for himself, progressively, over just a month. He started as a reporter at the top of his field, just back from doing a (posthumously :frowning: ) award-winning documentary in the Congo, and then he lost his ability to speak properly, and then his ability to eat and care for himself without help, and then his ability to move. It was devastating to have it go quickly; to have it go slowly must be appalling. So I know a little of what it’s like, but not like it’s happened to you.

Forgive me, I’m just rambling. Just so you know you aren’t alone in having to deal with something so cruel.

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matt_mcl, I did read about your loss, and I completely sympathize. The hardest thing for me was to watch the almost daily desintegration of someone I love, all the while KNOWING that she was in there, as smart and funny and loving as ever.

We prayed for it to be over. No one should have to live or die like that. Her last month was a living death.

Thanks for your thoughts.

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lavenderviolet - I didn’t mean to leave you out of my thanks. I agree, there has been very little research into this disease since Stephen Hawking proved that with enormous intervention and concessions, people are able to live with the disease. My aunt used to say that until there is something “mainstream” about this disease (ie Michael J. Fox and Parkinsons), it will just keep burying people in their own minds. Thanks for even looking into it.

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Anna, I doubt it’ll be of any comfort, but I’m sorry, and you’ll be in my thoughts. The positive ones. You know.

:frowning:

{{{{AnnaLucretia}}}}

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Gadfly - it IS a comfort. Thanks.

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{{{{Anna}}}}
Been there, done that (dammit).

I’ve mentioned on the boards before, my wife died of ALS nine months after diagnosis, just shy of her 49th birthday. As others have said, the worst part is helplessly watching your loved one’s mind, perfectly functional, die in a deteriorating body. That and the helpless feeling you have, unable to do anything about it. I’d almost wished she had cancer instead – there would have been a fighting chance.

Dreadful disease I wouldn’t wish on my worst enemy.

DD

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DesertDog - I can’t even imagine having to watch a spouse go through that. You must be a terrifically strong man.

I feel your pain. It is a great comfort to me to know that other’s feel mine as well. Thanks.

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At the risk of being incredibly insensitive:

As horrible as ALS is, I think there are worse things. It’s terrible to watch a healthy, functioning mind trapped in a failing body, but I suspect caring for a essentially healthy body that contains a deteriorating mind is utterly soul-destroying. Given a choice between Alzheimer’s and ALS, I’d take ALS any day.

[/poor attempt at comfort]